Thursday, February 27, 2014

Here is Katie looking a bit dapper, I like this picture. She really should be on a runway. We have had the tongue incident again, this time for about a week so far. It just sticks out. All day. I think she might be at the end of it, but still have no idea why. This has happened before (3 times) and I see I have noted it in my blog. We go to the doctor today so he can tell us he has no idea why, ha ha! I thought maybe it was due to allergies so I bought some kids allergy medicine, but no luck. Tongue still out. Last time I wrote that maybe it was due to a growth spurt - she has grown so much in the last year - I really don't want it to be that. Longer legs means a longer fall to the floor.

Update: it was 3 weeks of the tongue out and of course the Dr. had no idea why!

Tuesday, February 11, 2014

Ok, so I am over feeling sorry for myself now. Here is a saying, or blurb, or whatever you want to call it that I found and put on Katie's picture. I just love this saying! I can tell this picture was about a year ago before Katie got her front teeth in.

I do believe she will talk one day - she has been sick for a week and I think - because she is feeling a little needy - she has been saying, "Mama" a lot, and I mean a lot! I LOVE it! Paul's jealous...

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Katie's Story!

Read our story on the ViaCord website - click on the picture above

welcome to my blog!

Our daughter Katie, underwent a cord blood transfusion at Duke Medical Center in early January 2010. It was her own (umbilical) cord blood which we had saved at birth through a company called ViaCord. Not really thinking we would ever have a need for it, we were absolutely THRILLED at the thought that her own cord blood might be able to change her life, and help her to progress faster.

We are very hopeful that this procedure will help Katie to progress faster in overcoming her many physical delays. Mentally she seems to be fine, able to understand, and tries to communicate, but her physical delays hold her back.

What is expected is that the stem cells in the cord blood will repair or replace any damaged cells, or form new connections anywhere in her body that needs it. We were told not to expect much for at least 6 months - that most parents report a jumpstart in therapies at about that time. However, there are those families I have seen on youtube or the news who have incredible results - some even right away, and I can only be hopeful that we will have a similar experience. After all, I am her mom!

I believe that with the help of Katie's therapists, caregivers, and family, that I will be able to objectively sort out any milestones or changes that may be due to the stem cell transfusion, and that is what this blog is all about!

04/20/16 Katie has been diagnosed with a very rare gene mutation on the gene GRIK2. TGen is who found this gene mutation and put us in touch with a scientist at Northwestern University who is doing further research on Katie, specifically. So awesome!

about Katie

Katie was diagnosed with hypotonia at age 1, which is basically weak muscles, not really a true "diagnosis". We have no idea why she has this, but it delays her in many areas such as crawling, sitting, walking, talking, and fine motor skills. Katie is now 10 years old and she started walking about 4 years ago but still unsteady. Her coordination and balance are something we are constantly working on.
She did wear glasses from ages 2-4 and then her vision improved and she doesn't need them anymore, which is so great! Getting glasses on her was not easy - had to come from behind and put them over her head that way. It's nice not to have to worry about getting the glasses on her any more!
Katie can totally understand what you say, nods her head for "yes", has a few signs (for "more" and "me") but still is not able to talk much at all. Maybe a few words.
Katie is a work in progress!